FAQs

1What is Albinism?

Simply put, albinism is a decrease in or absence of melanin, the protein necessary for pigmentation. This typically affects the skin, hair and eyes.

2What is Melanin?

Melanin is a natural substance that gives color to hair, skin and iris of the eye.

3Does Albinism affect people from all races?

Yes, Albinism affects people from all races.”

4What is the common term used for a person affected by Albinism?

The person is called an “Albino”.

5Which segment of Nigerian population constitute the highest percentage of Persons with Albinism?

Children constitute about 40% of this population spread across all the States in Nigeria.

6Is Albinism contagious?

No, it is mostly a recessive inherited condition.

7What are the Symptoms of Albinism?

Some of the common symptoms of Albinism are: 1. Absence of pigment from the hair, skin, or iris of the eyes 2. Low vision 3. Partly or absence of pigment 4. Lighter than normal skin and hair.

8What are the types of albinism in humans?

Most people with albinism are fair in complexion, but their skin or hair colour is not diagnostic of albinism. There are therefore two main types of albinism: Type 1: Oculocutaneous (Prono unced ock-you-lowkew- Tain-ee-uc) albinism (OCA), pigment is lacking in the eyes, skin and hair. This type of albinism is more prevalent. Type 2: Ocular Albinism (OA) which is much less common, involves lack of pigment only in the eyes. People who have ocular albinism have generally normal skin and hair colour; many even have normal eye appearance.

9What are the challenges affecting the total well being of Albinism?

There are a number of issues and challenges that hinder and affect the total well-being of an Albino. These include: Vision, Skin Problems, Lack of Self-esteem, Myths about Albinism, Stigmatization, Stereotype and their effects on Learning.

10Are Persons with Albinism blind?

No, their vision may vary from 20/40 to 20/400. Persons with Albinism may be “legally blind” which is defined as vision that is not correctable to better than 20/200. However, this is quite different from total blindness.

11Do Persons with Albinism see better in the dark?

No, it is a myth.

12Can School be challenging for a child with albinism?

Yes, but with minor modifications and minimal assistance, students can be successful. The social side of education can potentially be the most difficult however, due to name calling, bullying, etc

13Why do Albinos wear a hat or a cap?

It is to protect them from Ultra Violet rays.

14Can Albinos read books?

Yes, they can, if they have large prints.

15Does the light hurt their eyes?

Yes, the Ultra Violet rays from the sun hurt their eyes by destroying the iris and retina.

16Why do Albinos sit close to Television sets?

So that they can see very well as they have eye impairment.

17Which is the best Sun Screen for Albinos?

The one that has a UVB filtered 50+

18Can an Albino see properly?

No, she can’t see clearly things that are far away or some distance away.

19Will Albino’s eyesight stay the same?

Yes, it is unlikely to get any better, but like everybody’s eyesight it may get worse as they get older.

20Why do her eyes wobble?

They wobble because of a condition called Nystagmus.

21Why do Albinos heads wobble?

Their heads wobble just very slightly sometimes to counteract their Nystagmus, to sometime automatically improve their vision.

22Which Doctor should I ideally see if I am suffering from albinism?

You should see an ophthalmologist and a dermatologist.

23Are there any developmental problems associated with ocular albinism?

Usually there are no developmental problems associated with ocular albinism but in rare occasions when there is a chromosomal deletion within the gene , it can result in deafness, developmental retardation, and mildly shortened stature.

24What is the lifespan of an Albino?

Albinism does not usually affect the lifespan. However, the lifespan can b e shortened in the Hermansky -Pudlak syndrome due to lung disease or bleeding problems. Persons with Albinism may have to limit their activities because they cannot tolerate sun exposure.

25What is the “null point”?

Persons with Albinism have a poorly developed fovea. In normal-sighted people, the fovea is in the center of the macula and an image will land there when the person is looking straight ahead. Their fovea is where they focus for their best detail vision – such as seeing a freckle on a person’s face. Because a person with albinism has an underdeveloped fovea, they must find their best area of focus, which may be anywhere on their retina. Typically, they will move their head to the position necessary to focus on this spot, consequently slowing their Nystagmus, and allowing for their best vision. This is their null point.

26How does a lack of pigment affect the eyes?

This is a complex question because it affects the eyes in several ways: 1. In a normal -sighted eye, the optic nerve (which connects the eyeball to the brain) includes some fibers that stay on one side of the brain and some that cross over to the other. Melanin provides the signal that indicates which fibers should cross over and which should not. In albinism, the lack of melanin results in an improper crossing which leads to poor depth perception. 2. The retina (the back of the eyeball) is made up of several cell layers. One of them, known as the retinal pigment epithelium, converts incoming images into a signal which is routed to the brain. People with albinism are missing the melanin that should lie within the retinal pigment epithelium. Without it, this signal is not processed properly and vision is impaired. 3. Decreased pigment in the iris (the part of the eye with color) and the retina leads to a diminished ability to absorb light. As light reflects off normal blood vessels in the back of the eye and through the pale iris, the effect is the red color sometimes seen in people with albinism. Insufficient iris pigmentation also causes people with albinism to be more light -sensitive and experience discomfort in bright light.

27Do all Persons with Albinism have white hair?

No. OCA1a is the subtype typically associated with white hair, as people with this type have no pigment. Depending on the type of albinism and the race, Persons with Albinism can have white, blond or brown hair. People with ocular albinism (OA), a subtype affecting only the eyes, can have black hair.

28Do all Persons with Albinism have pink eyes?

No. Most people with albinism have blue, green, hazel or even brown eyes. The pink appearance is due to the reflection of the back of the eye through a pale iris.

29If two Persons with Albinism have a child, will that child have albinism?

Not necessarily. There are different types of albinism that affect several different genes. If two people with the same type of albinism reproduce, all of their children will have albinism. If two people with two different types of albinism have children, NONE of their children will have albinism. The genetics are complicated, but that’s how it works.

30Is albinism associated with mental retardation?

No. Albinism does not cause mental retardation. In fact, some experts consider Persons with Albinism to have higher IQs than their siblings.

31Can Persons with Albinism drive a car?

Sometimes. The requirements vary by country and by state. Drivers may be required to use bioptics.

32Do Persons with Albinism disappear or melt and do not die?

No. It is a myth.

33Can having sexual relations with Persons with albinism cure HIV/AIDs?

No, it does not.

34Are Albinos sterile?

No, they are capable of reproduction.

35Do Persons with Albinism have magical powers?

No, they do not.

36Is albinism contagious?

No, it is hereditary.

37Is the presence of an albino in the family a curse or punishment?

No, it is not.

38Is albinism associated with deafness?

No, there is no known association between albinism and hearing loss.

39Can a non -albino marry an albino?

Yes.

40Do Persons with Albinism have to go to special schools?

No, most children with albinism function well in a mainstream classroom, with proper accommodation.

41Can Persons with Albinism read?

Yes, depending on the degree of visual impairment, some accommodations may be necessary. These include large print books, a CCTV, magnifiers, audio books, high contrast materials and many up and coming technologies. Although Braille is typically not necessary for people with albinism, some may learn to use it in order to give their eyes a rest.

42Is an Albino child a normal child?

Yes, children with albinism have low vision and sun-sensitivity but are otherwise “normal” children.

43Can body parts of Persons with Albinism make potent charms that can make people rich and successful or love potion?

No, this statement is spread by witch doctors in order to enrich themselves at the expense of others.

44Who is at risk of Albinism?

Albinism is a hereditary disorder and hence the following people are at a higher risk of developing the disease: 1. Children of parents who have albinism 2. Children of parents, who do not have albinism, but carry the altered genes that cause this disorder (carriers) 3. A positive family history for albinism.

45How is Albinism diagnosed?

Albinism can typically be diagnosed with a simple eye exam by an experienced ophthalmologist.

46Do Persons with Albinism spend a lot of time going to Doctors?

In the beginning, it may seem overwhelming. However, once a child reaches about three years of age, typically the only albinism-related doctor appointments necessary (outside of a yearly physical) are with an ophthalmologist every 6 months to 1 year and a dermatologist once a year.

47Can Persons with Albinism go outside?

Absolutely, with proper sunscreen and sunglasses, they can go anywhere.

48Why are there so many misconceptions about albinism?

Unfortunately, albinism is a poorly understood condition. The idea of “the evil albino,” while ridiculous, has been perpetuated by books, movies and the general media. (Please see www.lunaeterna.net/popcult for examples.) The truth is, of course, that Persons with Albinism are regular people who happen to have a decreased amount of pigment in their hair, skin and eyes.

49How can I meet other Parents of Children with Albinism?

You can contact The Albino Foundations (TAF) on Website; www.albinofoundation.org E-mail: albinofoundation@aof.doc

50Is there any cure for albinism?

Albinism can be efficiently managed.

The Albino Foundation envisions a society with equal opportunity for Persons with Albinism. We are an advocacy organisation that empowers persons with albinism and educates the society about albinism in Nigeria and the world.